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Except that all research involving patients is already under patient control in the form of informed consent. I think the idea is just to ensure that that process genuinely occurs in good faith - which includes things like patients not discovering later that studies are published behind paywalls.

I can see that getting a set of standards together that can be agreed on by a good range of ME/CFS-specific charitable funders might be a nice idea. It might even be agreed by some of the general funders like Versus Arthritis and Wellcome.

Yes but that is an exceptionally bad paper and not one from the Biobank I think! I doubt the steering group would have approved sending out samples for a project like that. It would be nice if groups like Fleischer et al did not undertake such studies and draw such conclusions but I find it...

You have a point there but there is a valid reason for being against the psychosomatic theory. It was the one thing that PACE disproved conclusively. Despite patients reporting that they felt a bit less symptomatic they had no increase in activity or ability to go to work. The theory stated...

I think the argument is a bit back to front here. From my perspective no researcher worth their salt should set up a project without clear approval of patients. I don't think anyone is suggesting that they need to have the approval of any particular pressure group - maybe like CFIDS. When I...

Indeed. My point was very much a politically driven one!

Promoting is different from recruiting. DecodeME was a bit unusual in that every possible route was used to try and attract lots of people. I had misgivings about bias but in this unusual case it may have been the least problematic approach. My memory of the requirements set up by the UK ME...

If the situation is anything like rheumatoid and osteoarthritis I suspect it is not so much that T2 becomes T1 as that gradual onset T1 in an adult who is not thin is likely to look like and be assumed to be T2. It may even behave like T2 to the extent that carbohydrate restriction and weight...

This is one thing that I think could be shouted from the rooftops. It should be a matter of law. Not specific to ME/CFS of course but no harm in saying it in whatever context. I would strongly advise against that for just about any disease and certainly for ME/CFS. It will not produce a...

I actually think the recruitment may have been a huge problem. Things are complicated but in a sense their argument that the problem is 'effort preference' is based on proving that PWME could do everything, they just preferred not to. And that could very well have simply reflected the fact that...

I am not very keen on the idea, other than simply saying that ethical research is that which has good enough methodology to provide useful answers that help PWME. There is huge pressure from certain patient and public groups to allow access to unlicensed unproven treatments and to ban vaccines...

Agreed. But picking apart bad arguments can be a very useful exercise while you are waiting for a breakthrough. Many many times I have engaged in critical discussions where we have realised that our critical argument doesn't quite follow through and that there is a serious possibility that we...

I fear that is over-generous. If during acute Covid someone gets lung damage they can be treated as someone recovering from pneumonia. I doubt there is actually any rehab after being in hospital much. You just build up strength and get used to being able to do less. If the complication was a...

I am afraid that this is all too biopsychosocial. It deliberately mixes up biology and psychology exactly as before. It would be nice to use it to encourage more NIH funding (NIH have previously funded better projects so it is not a starting-off point.) I would have to suggest "We appreciate...

I agree. If it has an effect worth the risk 20 in each group would be enough to show it.

The real problems putting rehabilitation before research that shows it is any use.

Thanks, I had forgotten we had news of it in February. But the email I received today at least gives me a justification for flagging it up at the Government ME research working party. It also gave me a clearer idea of who was involved.

I thought it had a poetic touch, even if it wasn't meant to!!

Merged thread I have received a message indicating that a new professional organisation is being set up (linked to BACME) for post Covid and other post-viral conditionss under Physical Medicine and Rehabilitation with the help of NHS England. The message suggests that the sociaety would be of...

I think that is exactly right. It is quite hard to find a clear way of expressing one's intuitive sense of 'no way' about this but that is a good one. Another way maybe is to point out that the authors are wrong to talk of the brain deciding things. The brain is a forum within which...